Pediatric Consumer Health Information
A core bibliography prepared for a workshop November 16, 1999
Updated and expanded December 21, 2005; April 23, 2010.
by Brenda Pfannenstiel, MALS, MA, AHIP
Manager of Library Services
Kreamer Family Resource Center and Health Sciences Library
Children's Mercy Hospital & Clinics
2401 Gillham Road
Kansas City, MO 64108
816-234-3900
http://www.childrensmercy.org/Content/view.aspx?id=151
There are many parenting books (e.g., Christophersen E, Mortweet S. Parenting that works. Washington D.C.: American Psychological Association; 2002, available on Kindle 2009), which I won't list here. I would only suggest that you include parenting books that acknowledge different ethnic groups (e.g., Thompson, G. A Brighter Day: How Parents Can Help African American Youth. Sauk Village, IL:African American Images; 2010.), multiple births (e.g., Flais, SV. Raising Twins. Elk Grove Village, IL: American Academy of Pediatrics; 2010), and different family configurations (e.g., Johnson S, Carlson J, Bower E. Grandloving. Lancaster, VA: Heartstrings Press; 2010).
A good medical dictionary is vital to any consumer health collection. Consider Mosby's Medical, Nursing, & Health Professions. 8th ed. St. Louis: Mosby; 2009 which is written more accessibly than a Stedman's or Taber's and which includes many color pictures and illustrations, along with appendices covering pediatric developmental milestones, nutritional content of foods, Spanish-French-English equivalents of common medical terms and phrases, conversion charts, etc.
If you have one shelf for pediatric consumer health, consider these:
Child Health and Development:
Shelov SP, ed. Caring For Your Baby and Young Child: Birth to Age 5 5th ed. Elk Grove Village, IL: 2009. American Academy of Pediatrics; available in English and Spanish from the AAP Bookstore at http://www.aap.org/
Schor EL, ed. Caring For Your School-Age Child: Ages 5 to 12 Elk Grove Village, IL: American Academy of Pediatrics; 1999. Available from http://www.aap.org/
Greydanus DE, ed. Caring For Your Teenager Elk Grove Village, IL: American Academy of Pediatrics; 2006. Available from http://www.aap.org/
Shu J, ed. Baby & Child Health: the Essential Guide from Birth to 11 Years Elk Grove Village, IL: American Academy of Pediatrics; 2004. Available from http://www.aap.org/
Illness
Schmitt BD. Your Child's Health: The Parents' One-Stop Reference Guide to symptoms, emergencies, common illnesses, behavior problems, and healthy development. New York: Bantam; 2005.
Altmann T. Mommy Calls Elk Grove Village, IL: American Academy of Pediatrics; 2009. Available from http://www.aap.org/
Dowshen SA, Izenberg N, Bass E. KidsHealth Guide for Parents: Pregnancy to Age 5 Chicago: Contemporary Books; 2002 See also http://www.kidshealth.org/
Mayer G, Kuklierus A.What to Do When Your Child Gets Sick. La Habra, CA: Institute for Healthcare Advancement; 2003. Low literacy book available in English, Spanish, and Vietnamese from http://www.iha4health.org/
Mayer G, Kuklierus A. What to Do for Teen Health La Habra, CA: Institute for Healthcare Advancement; 2003. Low literacy book available in English and Spanish from http://www.iha4health.org/
Woolf, AD, ed. The Children's Hospital Guide to Your Child's Health and Development. Reading, MA: Perseus Publishing; 2002.
Fisher, MC, ed. Immunizations & Infectious Diseases Elk Grove Village, IL: American Academy of Pediatrics; 2005. Available from http://www.aap.org/
Offit PA, Fass-Offit B, Bell LM. Breaking the Antibiotic Habit: A Parent's Guide to Coughs, Colds, Ear Infections, and Sore Throats. New York: John Wiley & Sons; 1999--an area of controversy as parents sometimes demand antibiotics for viral illnesses, resulting in overuse of antibiotics and the development of antibiotic-resistant strains of bacteria.
Drugs. Nutrition, Feeding:
USP DI v.2, Advice for the Patient: Drug Information in Lay Language Greenwood Village CO: Thomson Healthcare, 2006. For all ages but includes information specific to children and adolescents; also online at http://www.nlm.nih.gov/medlineplus/druginformation.html
Satter E. Child of Mine: Feeding with Love and Good Sense Palo Alto, CA: Bull Pub.; 2000–a classic for a reason!
Meek JY, ed. New Mother's Guide to Breastfeeding Elk Grove Village, IL: American Academy of Pediatrics; 2002. Available in English or Spanish from http://www.aap.org/
Hassink SG, ed. A Parent's Guide to Childhood Obesity: A Road Map to Health Elk Grove Village, IL: American Academy of Pediatrics; 2006. Available from http://www.aap.org/
Disabilities and Special Needs:
Wynbrandt J, Ludman MD. Encyclopedia of Genetic Disorders and Birth Defects New York: Facts on File, 2008 and/or
NORD Guide to Rare Disorders Philadelphia: Lippincott Williams & Wilkins; 2003. Both books describe the more uncommon health conditions of children, and list directory information for associations that provide information and support.
Phelps, LeAdelle. Chronic Health-Related Disorders in Children : Collaborative Medical and Psychoeducational Interventions Washington D.C.: American Psychological Association; 2006--this book has brief chapters on a variety of disorders, ranging from ADHD to Williams syndrome, with a brief overview, a discussion of psychoeducational implications, and a discussion of outcomes, with a brief resource list--often just what a newly diagnosed child's parents, grandparents, or teacher wants to know: what does this diagnosis mean for my child's future? http://apa.org/pubs/index.aspx
Campito JS. Supportive Parenting: Becoming an Advocate for Your Child with Special Needs. Philadelphia PA: Jessica Kingsley; 2007. http://www.jkp.com/
Batshaw ML. When Your Child Has a Disability. Baltimore: Paul H. Brookes; 2001. http://www.brookespublishing.com/
Whiteman NJ, Roan-Yager L. Building a Joyful Life With Your Child Who Has Special Needs. Philadelphia PA: Jessica Kingsley; 2007. http://www.jkp.com/
Zaichkin J. Newborn Intensive Care: What Every Parent Needs to Know. 3rd ed. Elk Grove Village, IL: American Academy of Pediatrics; 2010. Excellent description of ECMO and other useful information for the parent of a child who is off to a rocky start. Available from http://www.aap.org/
Injury Prevention and Emergency Response:
Holtzman DS. The Safe Baby. Boulder CO: Sentient Pub.; 2009 –making the home environment safe and healthy.
First Aid for Babies & Children Fast. New York: DK Publishing; 2006--really an example of a book parents should have at home; if the child is bleeding, choking, or not breathing it is not the time to visit the library for a book! This book has very clear illustrations and instructions; a good learning resource.
Remember also family health guides which include information for children; such guides are available from Johns Hopkins, Harvard Medical School, AMA, Mayo Clinic, American College of Physicians.
Also consider:
Hales DR, Hales RE. Caring for the Mind: the comprehensive guide to mental health. New York: Bantam, 1996--not exclusively a pediatric reference work, but includes excellent lay language explanations of children's behavioral and psychiatric disorders, as well as mental illnesses that commonly reveal themselves in adolescence (bipolar disorder, schizophrenia, etc.) Still the best plain language comprehensive mental health resource.
If you have the space and $, consider collecting books on common, long-term medical problems such as asthma, autism, hydrocephalus, juvenile diabetes, epilepsy, cerebral palsy, cystic fibrosis (Orenstein DM. Cystic Fibrosis. 3rd ed. Philadelphia PA: Lippincott Williams & Wilkins ; 2003) congenital heart disease (Neill CA, Clark EB, Clark C. Heart of a Child. 2nd ed. Baltimore MD: Johns Hopkins Univ. Press, 2001), Down's Syndrome, neuromuscular disorders, premature babies (Gunter J. The Preemie Primer. Cambridge MA: Da Capo Lifelong Books; 2010 and others), etc. See information on publishers and vendors, below.
If you are building a more comprehensive pediatric consumer health collection, consider also:
Bissell CM. Pediatric Tracheostomy Home Care Guide. Sudbury, MA: Jones & Bartlett, 2008.
and remember that many books for rare childhood conditions are not available from major publishers, e.g. Myositis and You. Washington, D.C.: Myositis Association; 2007 available at https://www3447.ssldomain.com/myositis/store/Details.cfm?ProdID=439
You will have to hunt for books and videos on disease-specific web sites.
Books for kids:
Consider books about how the human body works, and picture books that promote acceptance of children with medical differences, e.g.,
Flemining VM. Be Good to Eddie Lee. New York: Philomel Books; 1993.
Senisi EB. All Kinds of Friends –Even Green. Bethesda, MD: Woodbine House; 2002.
or that describe common medical experiences
Hest A. Don't You Feel Well Sam? Cambridge, MA: Candlewick Press; 2002.
Zonta P. Jessica’s x-ray. Toronto: Firefly Books; 2002.
Duncan D. When Molly Was in the Hospital: A Book for Brothers and Sisters of Hospitalized Children. Windsor, CA: Rayve Productions; 1994.
Anything from JayJo Books "Special Books for Special Kids" series, e.g.:
Gosselin K. Taking Asthma to Camp. St. Louis, MO: JayJo Books; 1995.
Gosselin K. ZooAllergy. Valley Park, MO: JayJo Books, 1996.
Bryant JE. Taking Speech Disorders to School. Plainview, NY: JayJo Books; 2004.
Henry CS. Taking Cancer to School. Plainview, NY: JayJo Books; 2001.
Publishers:
Woodbine House (www.woodbinehouse.com, 800-843-7323) Excellent books for children and for adults on disabilities, some also in Spanish. If you have a population coping with lifelong disabilities this collection is a great resource: ADD, autism, cerebral palsy, deafness, Down syndrome, spina bifida, etc.
Patient-Centered Guides (www.patientcenters.com) for a growing list of books on childhood cancers, wheelchair selection, mental health, etc.
JayJo Books (http://www.jayjo.com/) --Special Kids in School Series, mostly for ages 5-10.
American Diabetes Association (http://www.diabetes.org/ )The Store has books about raising kids with diabetes, and lots of cookbooks. See also the
Juvenile Diabetes Research Foundation bookstore http://www.jdrf.org/ See the JDRF Bookstore.
Epilepsy Foundation of America (www.efa.org/store) has affordable books and videos in English and Spanish, for children and adults.
Paul H. Brookes Publishing (http://www.brookespublishing.com/) for books on child development, education, and disabilities with an advanced reading level.
Magination Press (www.maginationpress.com/) American Psychological Assn. has children's picture books on fears, therapy, foster care, eating disorders, etc.
National Cancer Institute (https://cissecure.nci.nih.gov/ncipubs/ )—free! Some printed booklets also available on CancerNet, includes smoking cessation, nutrition, and cancer treatment, some in low literacy format.
Boys Town Press (counseling resources) http://boystownpress.org
Boulden Publishing (counseling resources) http://www.bouldenpublishing.com/
Centering Corporation (grief resources) http://www.centering.org/
Western Psychological Services http://www.wpspublish.com/ See section called “Intervention Materials and Books”
Brain Injury Association Bookstore http://www.biausa.org/
Kids with Heart Bookstore (congenital heart defects, etc.) http://kidswithheart.org/
Baby Hearts Press http://www.babyheartspress.com/ (congenital heart defects, etc.)
NCES (Nutrition Counseling Education Services) http://www.ncescatalog.com/ or 1-877-623-7266
Zero to Three (early childhood) http://www.zerotothree.org
National Braille Press http://www.nbp.org/
Special Needs Books http://www.specialneedsbooks.com/
If you have space and $, consider children's book series on diseases and health from http://librarypublishing.scholastic.com/, Lerner at http://www.lernerbooks.com, and the popular books at Kane/Miller (Everyone Poops, The Gas We Pass) http://www.kanemiller.com/.
Omnigraphics--think twice! Expensive titles, which in authority, currency, and readability do not often improve upon what can be readily found on the more responsible WWW sites. Be selective when considering this series. Phone 800-234-1340. http://www.omnigraphics.com/
Medical Book Vendors who carry consumer health titles:
Majors http://www.majors.com/ (Now owned by Baker & Taylor)
Matthews http://www.matthewsbooks.com/
Rittenhouse http://www.rittenhouse.com/
There is a vast array of suppliers for brochures on child care, safety, disease and drug topics, but brochures and pamphlets are a headache to keep organized and current so you may elect not to keep that information. Remember that local, state and federal government agencies may have brochures that they will give to you. Brochures are intended as give-aways rather than as part of your permanent collection, so keep them in mind to purchase for health fair exhibits or to hand out to library visitors. Increasingly, such information is available on the World Wide Web to be printed as needed; see web site listings below.
Serials:
Parenting magazines such as Parenting, American Baby, etc. have columns on health, safety, and nutrition. Many children's magazines such as Child Life, Humpty Dumpty, and Turtle have a regular column called "Ask Dr. Cory." There are many magazines and newsletters devoted to specific disorders. If your shelf space and funds are limited, consider these:
Exceptional Parent (www.eparent.com) --for parents of disabled children; this glossy magazine offers useful articles on living with a disability, ads for extra-large cribs, mobility devices, etc., and publishes an annual resource guide. A first choice for families of disabled children.
ADDitude (www.additudemag.com) –attention deficit disorder
Adoptive Families (www.adoptivefamilies.com)
Allergy & Asthma Today (www.aanma.org)
Current Health 1 and 2 (www.weeklyreader.com) – health education for middle school and high school children.
Epilepsy USA (www.epilepsyfoundation.org)
Food Allergy News (www.foodallergy.org)
Insights into Spina Bifida (www.spinabifidaassociation.org/)
NIH MedlinePlus Magazine (www.medlineplus.gov) –Primarily for adults, but free, attractive, and available in English or Spanish.
Nutrition Action Healthletter (www.cspinet.org) –if parents learn to eat better, they will feed their kids better
Quest (quest.mda.org) –muscular dystrophies and movement disorders
Sports ‘N Spokes (www.sportsnspokes.com) –wheelchair recreation, mostly adult but inspiring to children and teens with disabilities. Handcycle and racing chair ads.
Good General WWW Consumer Health Information:
MedlinePlus http://medlineplus.gov/ (doctor/hospital/consumer health library directories, growing list of health topics including many relevant to children's health, e.g., asthma, teenage pregnancy, etc., links to authoritative resources, interactive tutorials, drug information, a medical encyclopedia with pictures, in English and Spanish. Some materials in other foreign languages, some in low literacy format.)
HealthFinder http://www.healthfinder.org/ (has a section on children but you can also search to find a wide array of useful information, e.g., hydrocephalus; also searches in Spanish)
Mayo Clinic Health Oasis http://www.mayohealth.org/ --limited pediatric content.
Med Help http://www.medhelp.org/ (patients can ask questions of doctors--unlike some "ask the doctor" sites, this one meets high standards--HON code approved)
NOAH http://www.noah-health.org/ (includes lots of pediatric brochures in English and Spanish; can be searched in either language then toggled to other language)
Family Village http://www.familyvillage.wisc.edu/ (a global community of disability-related resources, note its shopping mall for adaptive clothing and assistive technology, its links to recreation and travel resources, and its search feature which enables you to pull up quality-filtered resources for a given diagnosis. Scoliosis, Apert's syndrome, Down syndrome, ADHD--any kind of birth defect or disability might be found here, with contact information for support, online FAQs and brochures, and web sites.)
Genetic Alliance Directory http://www.geneticalliance.org/ Searchable by organization or by disease/condition
NORD (National Organization for Rare Disorders searchable by disease or by organization; subscribe to get the full reports but summary reports are free and include links to other resources) http://www.rarediseases.org
Genetics Home Reference http://ghr.nlm.nih.gov/ --Note the handbook that explains genetic concepts (e.g., mosaicism) in “almost” plain language; includes chromosomal conditions, links to patient resources.
CDC Health & Safety Topics http://www.cdc.gov/
Internet Mental Health http://www.mentalhealth.com/
CAPHIS http://caphis.mlanet.org/ (Consumer and Patient Health Information section of the Medical Library Association)
RXlist http://www.rxlist.com (drug information with a forgiving search engine for spelling-challenged searchers; includes pill identifier, dictionary).
Note: if you are affiliated with a hospital library, you may have access to Lexi-Comp Online, which includes patient handouts on many drugs, in multiple languages. Choose the Pedi-PAL handouts for information about drug therapy for children. Remember that MedlinePlus also has drug and supplement information in plain language.
Pediatric WWW CHI for parents:
KidsHealth http://www.kidshealth.org/ (The Parent's section is especially good for infectious diseases, but also has excellent safety information and even information on subjects such as urinalysis. Lots of topics written for kids and teens as well.)
American Academy of Pediatrics http://www.aap.org/ See their web site for parents at http://healthychildren.org/
National Information Center for Children & Youth with Disabilities http://www.nichcy.org/ (Includes lots of online publications concerning education and disabilities, in English and Spanish, links to state resources also.)
Family Village: A Global Community of Disability-Related Resources http://www.familyvillage.wisc.edu/ (Shopping mall is a good source of links to specialized clothing, adaptive equipment, even shoe exchanges, while the recreation section is a good place to start looking for special needs summer camps.)
American Academy of Child & Adolescent Psychiatry Facts for Families http://www.aacap.org/cs/forFamilies (multiple languages)
LD Online (learning disabilities and ADHD) http://www.ldonline.org/
CancerNet Childhood Cancers http://cancernet.nci.nih.gov/cancerinformation/cancertype/childhood/
Good WWW for kids:
Neuroscience for Kids http://faculty.washington.edu/chudler/neurok.html
KidsHealth for Kids http://www.kidshealth.org/kid/
KidsHealth for Teens (Teen Health) http://www.kidshealth.org/teen/
My Pyramid for Kids http://www.mypyramid.gov/kids/
BrainPOP Health Movies http://www.brainpop.com/health/seeall/ (most require subscription)
Innerbody (human anatomy and automobile construction!) http://www.innerbody.com/
Tutorials for Children and Families (asthma, cerebral palsy, chronic constipation and encopresis, cleft lip and palate, GERD, inflammatory bowel disease) http://www.hsc.virginia.edu/internet/pediatrics/tutorials/home.cfm
Children With Diabetes http://www.childrenwithdiabetes.com
Bandaids & Blackboards (kids with medical problems go to school) http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/
Kidd Safety (games!) http://www.cpsc.gov/kids/kidsafety/index.html
Mercy Bear's Big Adventures http://www.childrensmercy.org/Content/view.aspx?id=2209
Space Doctor Game http://www.bbc.co.uk/science/space/playspace/games/spacedoctor/
See also “Human Body & Mind” section
Nobel Prize in Medicine http://nobelprize.org/medicine/educational/
American Dental Association For Kids http://www.ada.org/353.aspx
DigiTeeth - the zany oral hygiene game http://www.gamezero.com/gamezero/games/1998/teeth/
A Science Odyssey: You Try It: Doctor Over Time Activity http://www.pbs.org/wgbh/aso/tryit/doctor/shockwave-nojs.html
Jump Into a Healthy Life (jump rope skills and heart health) http://library.thinkquest.org/5407/index.shtml
FDA Kids' Home Page http://www.fda.gov/ForConsumers/ByAudience/ForKids/
CDC Youth Tobacco Prevention http://www.cdc.gov/tobacco/youth
Human Body "Blending In But Staying Special" (organ donation, body systems—site by and for elementary students) http://library.thinkquest.org/5777/
FEMA for Kids http://www.fema.gov/kids/
LD Online KidZone (learning disabilities) http://www.ldonline.org/kidzone/kidzone.html
Cool the Burn (types of burns and how they heal) http://www.cooltheburn.com/
Remember, many web sites for associations that support families with particular diseases or disorders have a kids' corner or teen "room" for their younger members. There are many sites devoted entirely to children with specific disorders (e.g., UC and Crohn's at http://www.ucandcrohns.org/), of varying quality. Increasingly, patient community sites include social networking features attractive to young people, but hard to evaluate for safety, accuracy, privacy, etc.
Pediatric CHI software:
Commercial sources of patient education handouts for pediatricians to give to patients.
Pediatric Advisor from Clinical Reference Systems (McKesson)
This resource is available on many public sites and can be tailored with links for the sponsoring institution. For example: http://www.childrensmercy.org/pa/default.aspx?paSearch=*
Patient Education for Children, Teens, and Parents (English or Spanish)
http://www.aap.org/ --Search the Bookstore
Videos:
Choose videos for common problems and issues first; depend on access rather than ownership to provide your clientele with videos on less common subjects, e.g., brachial plexus injuries or progeria. What follows are suggestions for relatively inexpensive (under $100) films. Remember that streaming video on the web is increasingly available; MedlinePlus has videos on many diseases and procedures, Healthy Roads Media has videos on common health issues narrated in multiple languages.
Baby Signing Time –this series is popular with parents of typically developing children as well as with children who have hearing loss, autism, Down syndrome, or apraxia of speech. Affordable. (www.signingtime.com)
Blast! Babysitter Lessons and Safety Training (CD-ROM, 2007, for ages 8-12, includes CPR instruction, available from www.aap.org AAP Bookstore)
Down Syndrome: the First 18 Months (108 min., DVD, 2003, available from Woodbine House (www.woodbinehouse.com)
Following the Clues: A Visit to the Doctor and the Library (computer file narrated in English, Spanish, and Sudanese-Nuer teaches health literacy concepts of making an appointment, preparing a list of questions and concerns to discuss with the doctor, bringing a bag of one’s medications, asking questions of the doctor and writing down what one needs to remember, asking the librarian for information to learn more about one’s chronic condition. 12-15 min., 2005, also free online at http://www.unmc.edu/library/following.htm)
MyPyramid.gov Steps to a Healthier You—Pass It On! (16 min., DVD, grades 6 up, English & Spanish, CC, www.learningzoneexpress.com)
Seizure First Aid (12 min. DVD, 2007, http://shop.epilepsyfoundation.org/)
In a hospital setting, you may want to seek out procedural/home care videos such as
Caring for an Infant’s or Toddler’s Ostomy (16 min. DVD, 2007, www.FamilyHealthMedia.com)
Video Sources:
I have not purchased videos from all these sources, so--buyer beware. One of my ongoing frustrations about many video catalogs is their failure to indicate copyright dates. These video sources are primarily for consumer health/health promotion/health & safety education, rather than patient education videos that demonstrate and teach specific procedures and patient care.
Aquarius Health Care Videos http://www.aquariusproductions.com/
At-Risk Resources http://www.at-risk.com
Attainment Company (videos, software, equipment for children & adults with special needs) http://www.attainmentcompany.com/
Child Development Media http://www.childdevmedia.com/
Fanlight Productions http://www.fanlight.com/
Films for the Humanities and Sciences http://www.films.com/
Injoy Videos (birth and parenting videos for teens and adults) http://www.injoyvideos.com/
Learning Seed http://www.learningseed.com/
Library Video http://www.libraryvideo.com/ (Use the Advanced Search feature to limit by format and audience age; best for health and fitness education, not medical problems)
MarshMedia (all health titles available in English or Spanish) http://www.marshmedia.com/
Miller-Fenwick Patient Education Library http://www.milner-fenwick.com/
Pyramid Media http://www.pyramidmedia.com/
Sunburst (K-12 health education/risk aversion) http://www.sunburst.com/
Vida Health Communications http://www.vida-health.com/
Patient Education Sources and Miscellaneous:
NIMCO, Inc. (videos, charts, books, CD-ROMs, models) http://www.nimcoinc.com
Anatomical Chart Company (charts, models, books) http://www.anatomical.com/
Channing L. Bete (health education brochures) http://www.channing-bete.com
Krames (patient education brochures, database) http://shop.krames.com/
ETR Associates (brochures, charts, videos) http://www.etr.org
Parlay International (health education resources) http://www.parlay.com/
Denoyer Geppert International (models, charts, CD-ROMs, books, videos) http://www.denoyer.com/
3B Scientific (models, charts) http://www.3bscientific.com/
Beyond Play (Early Intervention books, tapes, toys) http://www.beyondplay.com/
Tash! (assistive technology) http://www.tashinc.com/ -Ablenet http://www.ablenetinc.com/
Technology for Education, Inc. (assistive technology, books, videos) http://www.tfeinc.com
Abilitations (physical therapy and playground equipment) http://www.abilitations.com
FlagHouse (therapeutic recreation) http://www.flaghouse.com/
Playscapes (children's environments) http://www.playscapes.com
MediBadge (stickers, novelty toys, etc.) http://www.medibadge.com
I make no guarantee that this list of pediatric consumer health resources is complete, but it is a place to start. If you have a favorite resource that I have overlooked, please let me know.